The video I posted below is one example of our daily struggles with Allie and her feeding pump. Keep in mind that Allie needs her feeding pump 4 times a day and she wears it for 1 1/2 hours each time. This particular battle with her lasted a little over a half hour. Of course I didn't video tape the whole thing but I wanted to give you an example of what it's like in our house when Allie needs a feeding. Not every child is like this - some are better and some are worse.
Having a child with a feeding tube is challenging and by no means is it an easy way out. We battled with Allie for a year trying to get her to eat orally and now we battle daily with her just to tube feed her. It breaks my heart seeing Allie fight against her feeding tube 4 times a say like this but at this point in Allie's life, it's medically necessary for her to receive her feedings. Allie has post traumatic stress from all of the medical testing and procedures she has been through and as you can see in the video, Allie doesn't like anything to do with her tubie. I am praying one day Allie accepts her feeding tube and she allows us to hook her up with no problems.
In the video, Allie resisted the pump for a long time but in the end, she gave in and let me hook her up. I don't want to have to go through this every time she needs a feeding, it's exhausting on both of us. Don't get me wrong, sometimes about 3% of the time, Allie allows me to hook her up with no problems, but what you will see in the video is typically what happens when it's time for Allie's feedings. Of course we are working on this and it's not healthy for her to be so afraid or resistant to her feeding pump. After all, her feeding tube is what's keeping her alive. I now fully understand what a LOVE HATE relationship is - it's me and Allie's feeding tube!
I cannot say "enjoy" the video because there is nothing enjoyable about it. I'm sure many tube fed parents can fully relate to our daily experience and I completely sympathize with you. This is a real life struggle that we face everyday 4 times a day actually. But as always, I wouldn't change it for the world. Our little Allie is so special and we love her to pieces. She can be a challenge but God knows we can handle whatever little Allie brings to the plate!